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Iatogenic Cauda equina Syndrome

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:19 AM in Back Surgery and Neck Surgery
got the doctor to admit to me that i have Cauda Equina Syndrome. (Iatogenic means the doctor caused it as i didnt have it before the op)

The lack of toilet control is all down to the nerves being damaged - not inflammation he said when i was discharged.
He has no idea how long it will take for the nerves to heal or even if they ever will. I have a further set of tests at the continence clinic in 2 weeks which will show if there is any recovery happening. I may be able to get a further set of tests in before i see the surgeon again in September. This will mark 3 months since the op and next step will be decided upon then.

This explains why there is NO sensation during sex. Isnt it funny how if a woman starts talking about sex guys immediately get embarrased. Both my doctor and my partner cringed when i started explaining the problems in that area.AND I had warned my partner that i would be telling him!

The numbness in my leg could come back as i am having a lot of strange little tingling, cramp like sensations from my toes and foot which apparently are the nerves firing off randomly as they try to get back to life.

However i now have my next target set up - to get back to work. I am office based and live about a mile from work. I have a bus stop a few doors up that drops me off outside where i work so it couldnt be easier. Lets see what work say when i put it to them. It will be a couple of weeks before i can manage anything approaching full time.

The big problem is the toilet thing. I use a catheter 4 times a day and we have a large disabled toilet at work that is big enough to use. If I keep the poo thing at the slightly constipated side of normal i am unlikely to have any "accidents".

If anyone knows anything about CES - from experience or cant point me to a good source of information - i would be extremely grateful. I would like to know what i might expect or pointers on anything i need to look out for or do.

Thanks folks, sorry this is a long post


  • JC,
    I looked up your condition and let me tell you, it scared me. Quoting from the source, "An extreme version of nerve compression or inflammation is cauda equina syndrome. Cauda equina syndrome is a serious condition caused by compression of the nerves in the lower portion of the spinal canal.Cauda equina syndrome is considered a surgical emergency because if left untreated it can lead to permanent loss of bowel and bladder control and paralysis of the legs."
    If its a surgical emergency, why is your doctor treating it so mater of factly? I read the many ways you can get this syndrome and you are right, one way is medically (operation on the spine). Another way, is what I had in 2006, a spinal infection which effects the nerve roots. My bowels and bladder were effected but I was lucky they got it before any permanant injury occurred. I only had to deal with it a few months.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
  • Just a few weeks ago, I was told that I had CES. I have just been thru a series of test, as this is a very serious condition and no one wants to be a part of it. I have just changed medical facilities, one that specializes in this area. I'm hoping and praying that I do not get "brushed off" so to speak. My heart goes out to anyone with this condition.
  • JC, I am sorry to hear about your problem. Isn't it ironic that many of us agree to the surgery because there is a real danger of ending up with CES, then we find out that this could be one side effect of surgery. A no win situation. Sounds to me that you seem to have it as much under control as possible. Pursue it with the surgeon, after all, however inadvertably, he is responsible. You are also on the right track, when you try to find help through the incontinence clinic.

    I am really very ignorant on this subject but I have the feeling the the sensation during sex and feelings of urge to pee or poo are closely tied together. So if one gets fixed the others get better too.

    Just a thought, can you perform the Kagel exercices (contracting the vagina) or your numbness in that area makes it impossible. If you could do it, it would probably help, as that is one thing dr. aks patient to due to avoid or reverse mild incontinence.

    I hope you will find resolution to this difficult problem.

    Wishing you the best,

  • This is a very delicate subject, and difficult to talk about in a public forum, but rather than send you private message about this, I have decided to put it out here with the hopes that my situation can give others hope.

    I had a "contusion" to my cord during c-spine surgery, which resulted in the same types of problems as cauda equina. It was awful to always be wetting my pants or having bowel accidents, but I eventually learned how to manage this. I would suggest that you ask to be placed as an inpatient with a spinal rehab unit so that you can be trained on how to take care of it. Basically, I was taught to self-cath, and to keep myself cleaned out by doing an enema. It got to be pretty routine. I eventually learned that if I would just make an hourly trip to the bathroom, I could stop the self-cathing, as I still had a small amount of feeling and was able to make myself void, but the sphincter was so weak that I couldn't stop it from coming. Not many people know that I dealt with this for over a year, because on the outside you can't tell, unless of course the dreaded accident happens.

    Eventually I regained bowel function, for the most part. I am so thankful for this. My problems were caused from nerves and inflammation, and it took a long time for this to heal, but it did get better. I continued fighting bladder though. Fast forward now to May of this year. I had a revision, among other things, done to my neck surgery. Bladder was completely better 2 days post op. This surgeon completely decompressed my cord, and I think it is a miracle that my bladder is now working properly. I still have a little urge incontinence, and in fact have had a couple of recent episodes, but nothing like it was previously.

    I just wanted to give you some hope, that maybe it will get better. My first surgery was August 06, and so it has been a long battle. It sounds like you have a great attitude, and I wish you the best. Never give up hope, and keep pushing for help. Oh also, we were checking into having a stimulator implanted to control my bladder sphincter. It is designed much like a pace maker, and it is pricey, but you may be a candidate for it. They use it often on spine patients who have cauda equina. Ask your urologist if you would be a candidate for this.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Hi Jaycee,

    My only experience of this is seeing what my step-dad went through last year, and I think we've already spoken about this. He too has to self-catheterise several times a day. He was in a rehab ward for 3 months before he came home and in that time he managed to figure out a way of keeping the bowel movements under some kind of control. Basically it was a case of laxatives at the same time each day, and then learning what time he needed to be in the bathroom. As far as I'm aware that is still the case but it's obviously not something he discusses with us! I also know that he now suffers from erectile dysfunction as a result, but we know now that his damage is permanent. I really hope that turns out not to be the case for you.

    Good luck getting back to work, as long as you feel ready in yourself to that, then that's good. I'd recommend a phased return though because you will find it difficult adjusting to all of these issues at first.

    Best of luck with everything and I hope you find some more help out there. Hugs, Spicey :)
  • Just wanted to say that I am so sorry for you. I really hope that things work out for you. Be sure that you receive every opportunity and resource that is available to you! Best of luck!!! :) Andrea
  • so glad you got a diagnosis and can move on. talking about work is very positive, you are a strong lady. you can "train" your bowels so you'll know when you're going to go. I'm sure it'll come up during your appt's,tests or in PT but I wanted to let ya know it is done all of the time and may help ease your mind a bit.
    good luck
  • I have been unable to walk properly for a year and various other probs and it has taken me a year and loads of appointments and tests to finally hear a senior neurosurgeon say my cauda equina nerves are "pushed over to the right". I only got that from him after telling him that "failed back syndrome" was not an adequte explanation of my problems.
    I have had an upright MRI scan done recently and at last that showed the problem as ordinary "laying flat " MRI scans were not showing the displacement of the cauda equina.
    I've had 4 lumbar back ops and the last was a Dynesys L3-4 4 years ago.
    I am having to push very very hard to get a proper diagnosis of my condition here in the Uk with the NHS.
    This has been a horror story and it's not over yet.
    I don't know if I will ever be able to walk properly again but I think the spine consultants would rather I gave up. They don't want to really tell me the truth. I wonder why?
  • I only know i have CES because i asked the consultant outright if it was CES or not. He was quite sheepish about admitting it. I am visiting the dr soon to discuss getting some sort of assesment of the level of numbness etc i have as no one has actually documented it. They all just take my word for it. If i know what is numb/not working then i know what comes back. I want this to be done on NHS as i have spent most of the money i have for outpatients visits on BUPA. (BUPA paid for the op that crippled me)

    Dont have any physio at the moment and muscles are smaller on the left leg than the right, so much so you can see it. Different shape as well. consultant doesnt think i should have any till i get some feeling back - what if i never do??

    not a very positive comment i know but today i tried to go back to work and it wasnt as good as i had hoped as the toilet facilities were not sorted for me as was promised. I am NOT going to explain to all the male security staff in the building as to why i need to use the disabled loo.

    Fed up so going to bed and will try again tomorrow!!
  • Hi Jaycee,

    I too developed bladder atony after my last fusion.I'm lucky as it has begun to get better- I still do SIC four times a day but I am so much better than I was. I also came out with more pain than I went in with although the instability isn'tas bad as it was. I am waiting for my 4th fusion (the 3rd revision)now. It's going to be NHS as they're planning to use BMP and they private insurers wont cover it so i'm waiting and waiting to hear if the NHS will pay- joy!

    Anyway, my urologist says that these things can take upto four years to sort themselves out if they are going to so I am still hopeful that my baldder will get better. If you wanted to ask anything at any point then please feel free :-)

    I hope you're well

  • How have you been doing lately? Havent seen you on the board in a lil while. >:D<

    Christina :)
  • I'm amazed how many people are being left to fend for themselves with such a serious condition as CES.
    Not being given a diagnosis when presenting with such profound symptoms is called neglect - isn't it?
    I accept that in my case my surgeon tried to do his best for me and mistakes do happen. But when it becomes obvious that things have gone seriously wrong and a patient is sent on a wild goose chase from one consultant to another that's scandalous.
    There's incompetence and there's admin mistakes aplenty but I'm afraid my experience can only be described as "closing ranks".
    An A&E doctor asked me last Thursday after I'd fallen heavily on the base of my spine " hasn't anyone mentioned Cauda Equina Syndrome to you?"........
    My daughter and I exchanged glances and words failed me.
    If he could say it why couldn't these consultants who are supposed to be at the top of their professions?
    If it eventually turns out that it is Dynesys that has caused my current problems and I've been put through this needless hell for the last year whilst searching desperately for a diagnosis then this will have soured me forever where trust is concerned.
    I send everybody with these problems who's being neglected all my support and best wishes and thank goodness we have access to the web and vital information.

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